12 People on Joining ACT UP: ‘I Went to That First Meeting and Never Left’

It’s been 33 years since ACT UP — the AIDS Coalition to Unleash Power, a direct action group made up of men and women united in their fury at the lack of response from the government and pharmaceutical industry to the AIDS crisis beginning in the 1980s — took to Wall Street on March 24, 1987, to protest public apathy about and medical profiteering from the epidemic. Since that day, much has changed: how we think about grass-roots organizing, the ways in which community among marginalized groups is cultivated and fostered, the life expectancy and treatment of people living with H.I.V. and AIDS. While many of the issues the group labored to address also persist, ACT UP has created an indelible blueprint for on-the-ground activism that has paved the way both for other movements, including Black Lives Matter and Occupy Wall Street, and for subsequent generations of L.G.B.T.Q. people to continue to fight, unrelentingly, for justice.

For T’s Culture issue, which highlights a range of influential creative communities, we gathered 98 members of ACT UP, past and present, for a reunion of sorts at New York’s Manny Cantor Center in February. As the writer and director David France explains of the group’s participants in his accompanying essay, “They had little in common beyond what political scientists call a linked fate: Everyone in those meetings knew someone who was dying or had died, or else they were marked for death themselves. This brought a ferocious urgency into the room.” Here, in their own words, 12 members explain why they joined.

From the day I read the July 1981 New York Times article titled “Rare Cancer Seen in 41 Homosexuals,” I just knew that no one was going to do anything to respond. Several friends of mine had already died. So I started writing tirades in the gay press; it scared the crap out of everyone, and my pieces were published in other gay newspapers around the country. I worked with the Gay Men’s Health Crisis, which is a patient care organization, from January 1982, but they wouldn’t protest visibly. In contrast, ACT UP was a direct-action group and did nothing but protest. It was an exceptionally moving organization. There was so much love between the men and women fighting side by side.

In 1990, when I first moved to New York, I saw a couple of the graphics that ACT UP had posted all over the city. One of them said, “Women don’t get AIDS. They just die.” Underneath that, it listed the risk factors for women. At the time, I was dating someone who was an IV drug user and they would tell me, “There’s no reason to get a test, because women don’t get it.” When I finally got checked, I tested positive. The doctor who gave me the results said, “The only place that will give you advice is ACT UP.” I immediately remembered the poster that I had seen, and I went to a meeting that same day. I met people who were key figures within the group, and they helped me a lot; I learned not only how to take part in actions but also how to be part of a supportive community. They taught me — someone who wasn’t a great speaker and who had no experience working for AIDS organizations — to take up space in this movement.

I found out I was H.I.V. positive in late 1985 while I was a bond trader at JPMorgan. I was 24 years old and deep in the closet then. About a year and a half later, in March of ’87, I was handed a flyer on my way to work by a new organization called ACT UP that was doing its very first demonstration on Wall Street. I didn’t see the protest myself — I was on the trading floor when it happened — but I saw it that night on TV and was really impressed that they made the national news and that the F.D.A. commissioner held a news conference. I could tell that it was real, the kind of power that I wanted to tap into right away. I got myself to the very next meeting and never looked back.

I had a crazy year where I was a closeted bond trader by day and a radical AIDS activist by night. It ended when my CD4 count [the number of T cells in the body that fight infection and are the primary target of the virus] crashed in early ’88. I walked into my boss’s office the next morning, told him everything and dedicated myself to AIDS activism from that point on. I felt like I had entered the movement for very selfish reasons — I was desperate to buy myself some time — but within months of being part of this extraordinary response from a community that was filled with love and passion and determination and anger, I realized I was a part of something far larger than myself, something that could change the lives of millions of people. I got totally swept up in that. ACT UP became my church, my social life, what I did every moment of the day — it’s where I found all my boyfriends! And it’s where I became an activist, which has been my title ever since.

I got involved with ACT UP mainly because I knew that there were a lot of homeless people with AIDS and I wanted to try to develop housing for them. In 1987, I called Larry Kramer, who had been a friend of mine since 1980 — he helped me find doctors when I got sick, and helped my partner, who died in ’86, with access to medical care — and he told me about this speech he was going to give at the Gay and Lesbian Community Center, in which he was going to call for a group to be civilly disobedient. He asked me if I would be a plant in the audience and bring some attractive friends to encourage other people to come. So my initial attendance was driven by a request from Larry to come and help form a group. But the experience of organizing that first demonstration at the center was empowering: It allowed me to turn my feelings of anger at the loss of my partner into some type of action. I became hooked after that.

In September 1980, my boyfriend at the time, Jeff, whom I was living with, was diagnosed with Kaposi’s sarcoma. So, my relationship with the epidemic started early on. After his death in February 1986, I started to figure out what I would do with my life. I became a facilitator in my gay male consciousness-raising group, which met on Mondays in one of the rooms at the Gay and Lesbian Community Center. When my friend, the activist David Kirschenbaum, and I left each week, we would walk downstairs and through the ACT UP meeting. We entered the meeting one day, and the room was filled with mainly white gay men. I’m a person of color, and I have to get my bearings when I walk into an overwhelmingly white space. David asked me, “Well, where do we stand?” I looked around and found that, in that old ACT UP room, the power brokers were in the right-hand corner at the back. So I said to David, “That’s where we stand.”

I think the group had done its first Wall Street protest by then, and we were trying to figure out whether we wanted to get involved. Of course, I did. After having dealt with what Jeff went through, I was certainly pissed off enough. I thought, “This is a good way for me to deal with what I’m feeling now.” Recently, I’ve been trying to write an account, in my own words, of the racial politics of ACT UP — and about the whitewashing that’s going on. A lot of academics of color are actually now starting to write about this. It’s very important, because there were so many people of color who were part of ACT UP, even at the beginning — who were there and then died.

In 1981, I became active in the Women’s Pentagon Action, which is a feminist, anti-militarist group with connections to the War Resisters League (WRL), one of the oldest pacifist organizations in the United States. I was trained in nonviolent civil disobedience: We would discuss a demonstration and really walk through the safety of it to make sure that we weren’t doing anything to intentionally hurt people. When ACT UP started in 1987, some of the organizers of the first meeting reached out to the WRL. David McReynolds, a longtime member, and I dispatched WRL members who understood nonviolent civil disobedience — and that included the two of us, both queer — to go to the ACT UP meeting and do a brief training. After that, I just stuck with it.

As a pacifist, for me, it was always about acknowledging your anger and channeling it into something productive — and, of course, with people dying, there was so much anger. Although ACT UP did not take a vow of nonviolence, we had a series of principles that were built upon that; we had very clearly drawn lines. For me, the biggest struggle was working with people to make sure that we didn’t overstep those boundaries, that we didn’t turn into the Weathermen [the ’60s and ’70s-era radical faction of the left-wing Students for a Democratic Society], that we didn’t bomb buildings — which, in a time of desperation, when you’re watching all your friends die, would have been an easy direction for us to go in.

The first meeting I went to was in late ’87 at the Gay and Lesbian Community Center. I walked into the room with a friend and it was jam-packed. The first thing I noticed was the energy, which was palpable, of all of those people gathered together. Until that point, I hadn’t been in a room of people who had come together to talk about what our community response ought to be to the absolutely crushing indifference and outright hostility to the AIDS epidemic and people who had it. It was a transformative moment for me. I felt that something was possible if we fought together — and I had never felt that way before about H.I.V. and AIDS.

In 1988, I became a founding member of the Majority Actions Committee, which was an affinity group — one of the smaller caucuses organized around issues such as housing, treatment and data — within ACT UP. It was made up of people of color. A number of them died before we had access to effective treatment. That was a moment in which I was able to connect — in a way, frankly, that I had not been able to do before — my commitments to racial justice and sexual justice, to racial freedom and to sexual freedom. The self-identified Black, Latinx and Asian members who came together in the Majority Actions Committee were able to bring both a set of experiences and a political understanding to ACT UP that it would otherwise have lacked.

In 1987, I was working as a volunteer for the Gay Men’s Health Crisis, the AIDS service organization started by a group including Larry Kramer, helping with the annual AIDS Walk in New York, and I had decided to take a more active role in manning the phones. I remember one evening, when we were making calls for donations, a friend of mine walked into our office in Chelsea and said, “Hey, did you hear there’s going to be a demonstration on Wall Street tomorrow? They’re going to protest the fact that AZT is the only drug available to fight AIDS and how expensive it is.” That resonated with me, so I got up the next morning and went down to march. That group became ACT UP. I didn’t join officially until the fall of 1987, after the March on Washington. When I saw ACT UP then, in all its fiery fury, all of its grandeur, all of its sexy anger, I just thought “Wow, I want to be a part of this.”

I was meeting, once a week, with the graphic designers, art directors and artists that developed the iconography that ACT UP would later use — we created the “Silence=Death” poster in 1986-87 — and I was aware that Larry Kramer was one of the few people in New York who was writing about AIDS as a political crisis. When I saw the announcement at the Gay and Lesbian Community Center that he was going to speak there in March 1987, replacing Nora Ephron the night that she wasn’t able to make it, I suggested to the collective that instead of meeting that week, we go hear Larry talk. So I didn’t simply hear about ACT UP and go to a meeting: I was there at the genesis of it. Coming from a family that was engaged in politics, I probably had a very different experience of being part of ACT UP than people who came in cold. My parents were members of the American Communist Party, and my grandmother used to come to peace marches with me, so a lot of it felt very familiar. It wasn’t so much formative for me as it was a way of connecting my own political past to my queer identity.

I started the first gay and lesbian youth group in Santa Fe, N.M., in 1987 or ’88. But that was really just with friends in high school. The first action I participated in with ACT UP was the October 1988 protest against the F.D.A.’s slow drug approval process and the lack of support for affected communities. That was fairly early in ACT UP’s history, and the group invited everybody in the broader community to come down to Rockville, Md., for that action. A lot of people I knew were going, and it seemed like what people who were engaged with the community did. After that first year, I was involved with the protests primarily.

I was a founding member of the Brooklyn AIDS Task Force [now Bridging Access to Care NYC, Brooklyn’s oldest H.I.V. and AIDS service organization] and had attended a national conference at Emory University in 1987 that was sponsored by the American Medical Association. That experience led me to other conferences, and I can’t remember exactly where the idea of ACT UP membership came up for me, but it did, and I attended a meeting. So my involvement with ACT UP started very early on, and it was at around that time that I also joined the Women’s Caucus and the Majority Actions Committee, two of the several splinter groups within ACT UP. Hidden since the beginning of this crisis was its impact on women and children. I’m a third-generation Brooklynite, so New York City is my community; if there was social justice or human rights work to be done, then I would find it. Together with the women I was working with in the Caucus, we were writing and including our stories in this movement, and I was pleased with that.

I’ve been a member of activist groups since high school, and I first got involved in H.I.V. work when I moved back to New York after college in 2015. I was active in this group called Impulse Group NYC, which is part of the AIDS Healthcare Foundation, but because I thought they weren’t doing enough politically to advocate for PrEP and destigmatize H.I.V., I decided to channel all of my energy into ACT UP in 2016. The people who are part of this long history — it’s now been 33 years — really changed the way I view a lot of activist work. It’s helpful for young organizers to seek mentorship from our elders and long-term survivors. It’s sort of the best practices of protesting. We need to reference our history to reflect on what’s next in confronting H.I.V. and the stigma that continues to exist.

These quotes have been edited and condensed.

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